This is a place where I can post family updates and ramble about things as I try to find my way since the recent death of my daughter. Life has completely changed for my sons, my husband and myself. Our faith has been a great source of comfort and we'll continue to rely on it as we press forward.

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The Story of Christmas & Silly Socks

Tuesday, October 30, 2007

Need a Little Giggle? Then head on over to my "Much Adieu About Nothing" blog. I recently added 3 videos that I really enjoyed. I've been neglecting my 2 other blogs and they are feeling quite jealous. I've had some serious posts here so I thought I'd share some funny things on my more fun blog. I keep shoving cake at my dieting blog to shut it up so you may not see an update over there for awhile. hehe...

Anyway, I just thought I'd let you all know that there's some fun stuff over there. I like to take time to giggle even when life is busy and at times overwhelming.

I have asked for prayers for Paige a couple of times and I'm asking for prayers for her again. The last time I updated was when she was being flown to another hospital to be listed for a heart transplant. Well, come to find out, she doesn't qualify for a transplant at this point due to many things, including brain damage from 2 strokes. Paige is unconscious most of the time and when she is awake she can't move, speak, track anything with her eyes or even respond to sound. Her oxygen saturations were very low and she has an infection. She took a turn for the worse and they had to take her in for a cardiac cath to try to open a blockage. That didn't work so they had to do surgery to correct it. Paige's oxygen sats are better now but not quite as good as the doctors were hoping for. She has been in ICU for over a month now. I can only imagine how upsetting and tiring this is for her parents. They are away from home, job and family, including their son. Please continue praying for Paige and her family. My heart truly goes out to them.

Saturday, October 27, 2007

This week's theme is PINK... Jessica's and my favorite color! I hope you enjoy the photos!

Jessica riding a horse for the first time! Of course Jess is wearing PINK!

I took this picture of a sunset that I took out of the window of Jessica's hospital room last month. Several doctors and nurses were asking to peek through our windows since we had the best view! Notice the PINK among the many colors in the sunset.

Jessica all dressed up in her PINK princess dress and her PINK crown. She is all ready to go meet the Cinderella and Belle before going to the "Disney Princess on Ice" show.

Cinderella, Jessica and Belle in front of a PINK display advertising the Disney Princess on Ice show. Several girls from our local Tu Nidito group got a private visit with these princesses and then dinner at a Mexican restaurant before going to the show.

And finally, here is my PINK laptop computer bag! The good thing is that part of the proceeds go towards breast cancer research... the bad thing is that the zipper on it broke already! I'm waiting for the store to get more of these bags in so I can exchange it for another one. I don't want a boring black laptop bag... and of course I want to support the breast cancer research whenever possible.

I hope you have enjoyed a few of the pink pictures I posted. If my boys would only wear pink, they could be in this post too. hehe...

Wednesday, October 17, 2007

It seems that the Procainamide is helping! wOOt! Jessica still has periods of time where she says her heart is beating fast or hard but they don't last long - and they don't seem to be happening as often. We saw the Peds Cardiologist last Thursday and he said that she looked good! We did an EKG and it is the same as prior to the meds (they did an EKG several times while she was in the hospital). So everything looks pretty good! The doctor asked me if I wanted him to order a holter monitor and I said yes. He asked me why since Jess seems to be feeling better and do I REALLY want to know he was going to order a holter monitor. Yes, I REALLY want to know exactly how many PVCs Jess is actually having. I'm still waiting for the hospital to call me to set it up. I haven't called them since it's been a hugely hectic week and I'm not extremely worried about it. Jessica told me last night that her heart was beating "crazy" so I put the pulse ox on her. She was having some PVCs but they weren't in a pattern - just random. After a few minutes she went into a pretty steady rhythm and she was able to settle down and go to sleep. She doesn't have nearly as many PVCs when she is sleeping so I told her that what she needs to do is to go to sleep and then they will stop. I'm not sure if that will work but maybe it will give her some motivation to relax and that it's OK to go to sleep. She has been afraid to go to sleep for fear that she won't wake up.

This last Monday we had our first Tu Nidito group meeting of the year (they go by school year). It was so nice to be back. Jessica LOVES going to Tu Nidito and even though it's quite a drive for us and Jess gets tired easily, she did really well! She just about knocked me over when at the beginning of the group they had us all join together and asked if there were any announcements - Jess raised her hand and said, "I am out of the hospital because they found a medicine to CURE my heart!" Several people started clapping and many parents who know us were looking at me with very puzzled looks on their faces. I stepped in and said, "I need to qualify that - they found a medicine to help get rid of most of the extra heart-beats". Jessica knows that. In fact, on the way there she asked me if she could announce that she was home and has a medicine to get rid of the PVCs. It was just a slip of the tongue since she was nervous. After everyone separated to their classrooms and us adults were alone, I broke down and cried, telling the other parents that Jessica's heart disease is progressing and even though we have a medication to help with the PVCs, she is dying. The medication won't prevent tachycardia or a sudden heart attack. I told them that we found all this out right before my birthday. Three years ago right before my birthday Jess was admitted into a home hospice program because she was having lung bleeds practically daily. Now she is having 10,000 PVCs daily. I wonder what she is going to do in 3 years from now for my birthday? I started laughing through my tears. Knowing her, she will still be here trying to find new ways to scare me. LOL! Later, one of the other moms said that I was her hero and that she didn't know how I do it... that I've been caring for a child with a lot of health problems for 19 years. She's only been doing it for 4. I told her that in 19 years from now she will still be doing it for her daughter because she is her daughter. That's how I do it. She's my daughter - so I do whatever I have to do. Another mom chimed in that we (meaning me and Karl) have a great sense of humor and that helps. I laughed and said that we have a SICK sense of humor. Jessica has been using her hand to show me how her heart feels. She will make a fist and then open it wide and close it, open wide and close it. I tease her and say, Jessica, it's when your heart does this (I hold my closed fist up) that we need to worry. She says, "Oh MOoooooom!" and laughs.

Today is a very special day for Miss Jess. The Disney Princess on Ice is in town and our local support group, Tu Nidito, has arranged for the girls to have dinner at a Mansion downtown and then have a limo ride to the show! They are providing 4 tickets to each girl. Jessica is sooooo excited to go! Austin wants to go to spend time with Jessica and of course Karl and I want to go too! Brandon and Justen don't really mind missing it so they will stay at home and hang out together... hopefully not harming each other or the house. LOL!

Last week Austin took a spill off his scooter and broke his fall with his face and knee! He broke a tooth and was pretty banged up. That was on Monday. Tuesday I took him to the dentist and they did an x-ray, etc. The dentist showed me where the nerve was exposed. Anyway, he needed a root canal. :*( The dentist was able to do about 80% of the root canal but had to stop because there was too much bleeding in the area. So we went back on Thursday to finish it up.... the girls at the office had forgotten to call me and reschedule so we made the trip for nothing! At least they are only a few miles away. We went back on Monday and they were able to finish the root canal and reconstruct the tooth BUT... of course there's always a BUT... the tooth is loose and he may lose it. He is instructed to not bite with that tooth and to just leave it alone. We are to see him in 2 weeks and see how the tooth is doing at that time. Of course we had to pay for the root canal and tooth reconstruction at the time of service. I told the dentist that I had a dream that we paid him $800 for him to fix the tooth and then he ended up pulling it just 2 days later! He said, "that's not a dream... that's a nightmare!" Fortunately we have good insurance and out of $1,000+ we only had to pay $250. Of course that's not pocket change for us but we were able to do it. Austin has been such a trooper through this whole ordeal. He was quite traumatised at first but was able to settle down. The first visit to the dentist he asked for the "gas" and he was quite comfortable with it. The second visit was supposed to be very easy and since the nerve was already dead, they didn't give him anything. The dentist told him that if he felt any pain to stop him and he would give him something. Well, apparently Austin didn't understand the last part and when they were done he came out pretty shaken up. It broke my heart! But like a real trooper he got over it pretty quickly and was able to go home and enjoy the rest of the evening. Austin has healed up quite well but here's a couple of pictures the day of his accident... in fact, his knee and face looked worse the day after!

It's amazing how God works... He watches over us and blesses us in ways we don't even realize. Karl and I have been faithfully paying our tithing, having faith that we will be blessed. Last Friday I had a Creative Memories event and had quite a few ladies come. It was pretty hectic to start with - we were short quite a few tables but with Karl's and Justen's help we were able to locate and set up enough tables. My customers had a great time and kept me busy the whole night. I had a couple of new customers who really enjoyed themselves and want to come to more events. After all was said and done, I had a lot of sales... all of which was product that I had in stock! I earned enough to be able to pay for the work done on Austin's tooth and still have enough to place an order to replace some of the product that I like to keep in stock. Of course I'll be paying tithing on the profits. (For those who would like to know, I earn 30% on the product I sell.... and of course that's 30% discount on whatever I purchase for myself.) I have a CM home event this Saturday with a very sweet lady. SHE contacted me and asked to do one in her home. I haven't done a home show in at least a year! So I'm kind of nervous... but one of my other really great customers will be there too so I feel more at ease. I keep telling myself that I don't need to be nervous... just go and enjoy myself. I love what I do and I love the products... I do this for FUN, not for the sales so if I make some money GREAT! If not, then at least I got out of the house and had some fun with adult women! hehe!

Last night my mom called and I was telling her that my stomach hasn't been feeling very well lately and that I've been having more anxiety. Then I told her about all the appointments that I've had with Jess and Austin and how exhausted I was before even going to my CM event and that I needed all weekend to recover. All the things I've gone through with Jess and Austin are very emotionally draining and then of course all the running around is tiring. My mom said that it made her tired just hearing about all that I've been through the last couple of weeks. I realized , well, DUH....... no wonder my stomach isn't feeling well and I've had more anxiety. LOL! I need to give myself a break and pray for a boring week next week. haha!

Monday, October 15, 2007

My british friend Dan is always talking about the "man flu" and how women get colds but he gets the "man flu". Another british friend of mine, Debbie, sent me this video and I thought of Dan immediately! I just had to share it here. Enjoy!

I swear, if the sick man on the couch had long hair, it could be Dan! haha!

Saturday, October 13, 2007

I had asked for prayers for our friend, Paige, last week who had some complications following her surgery. Paige has not done well and has been going down-hill. I just found out that she was flown to another hospital to receive a heart transplant because her heart is doing so badly. She is in critical condition and desperately needs a heart soon. My heart goes out to her family and loved ones. My friend Cathy has been updating me about Paige. Cathy had a son, Jason, who passed away under similar circumstances on Aug 9, 2001. I made a webpage honoring Jasonhere. Cathy and I had become good friends online before Jason passed away and we finally got to meet in person a few years later - the same time that I met Jenn (Paige's mom). Fortunately Cathy and Jenn live only about 2 hours away from each other and have been able to meet up more over the years. Cathy and her husband were able to go visit Paige just over a week ago. What great friends they are to support others when they have been through so much themselves. In fact, Cathy volunteers her time to the CHD quit project making quiltblocks honoring other children born with CHD. She made Jessica's quilt block not long after Jason passed away. Sorry I got side tracked, but I just love these families so much! I wish I could be there in person to hold a hand, lend a listening ear or give a hug when needed. I appreciate any additional good thoughts and prayers for Paige, her family and those who love her.

On a positive note, our friend Lindley did very well through her surgery and is at home! Of course she is still healing but how happy she must be to sleep in her own bed - or one of her sibling's beds! She is keeping her momma on her toes of course. Hopefully they will be able to settle in to a new routine and that Lindley will not be as nervous about everything. (((hugs))) to you sweetie! [You can read more about how she is doing on her mom's blogJennyHaHa Flaw and Disorder. ]

Friday, October 05, 2007

I enjoy making cards as well as scrapbooking and of course have all my own tools to make them. Karl has his own workshop and loves woodworking and is currently building me a craft room. When I saw this video I just had to laugh... this would definitely be Karl's way of making a card! ENJOY!

Apparently this video isn't working here so here is the link to see it: MAN MADE CARD

Wednesday, October 03, 2007

The first little girl's name if Paige. She had surgery to take down the "fontan" because her body has not been able to adapt to the "fontan" circulation. (The "fontan" is a surgery that changes the way the blood is circulated from the heart - it allows more blood to get oxygenated but sometimes the patient's body can't handle it and they develope many complications) Paige has had a very rough time this last year and it was decided that they needed to undo the fontan circulation in order to help her body out. Her surgery was on Monday and she is having some complications to the surgery. Paige has a blood clot just outside her brain and the doctors are trying to get it to disolve by putting her on blood thinners. She is having some difficulties that I think are similar to Jessica's after she had a stroke. We don't know if Paige has suffered from a stroke, I'm just remembering what we went through with Miss Jess. Please pray that Paige is able to recover from this surgery and that she is able to regain her health. Please pray for her parents as they are devistated and only want the best for her. Several years ago I went to KS to a CHD quilt show. I met Jenn in person and she is one of the sweetest people I know. I had gotten to know her online and it was awesome meeting her in person.

The second little girl is Lindley, Jenny's daughter. I had a prayer request for her a couple of days ago. Lindley was supposed to have surgery yesterday but her mom hasn't updated her blog and I haven't received an email from her... so I don't know how it went. One of Jenny's friends made a button that I am posting here and on the sidebar. I will post any updates on these two sweet girls as I get them.

Edit: I just got this update about Lindley:

Hello Friends!

Lindley's surgery went well yesterday! They were able to repair the valve instead of replace it, and she has practically no leakage now! The breathing tube was taken out before we even saw her. About 5 more tubes and iv's were taken out today. She still has a central line in that goes to the heart itself as well as a couple of iv's in her feet.

She went into surgery about 1 p.m. yesterday and was finished a little before 6:30 p.m. We've been really happy with the medical care she's receiving. They're keeping her fairly sedated. She's had her issues with pain and nausea, but they don't drag on. She's having a hard time understanding why I won't take the tube out of her neck or give her something to drink. She just wanted to see her twin, but Gracie was scared of her since she's hooked up to so many machines. So she still needs prayers for comfort and recovery.

We're so grateful for all your thoughts and prayers! I'll provide updates as I can.

Love,Jennifer

Thank you for praying for my friends and their children. You all have been such an awesome support to me and my family, I appreciate your willingness to offer that support to these other families.